Deborah A. Bruns

The Gap Between Beliefs and Practices: Early Childhood Practitioners' Perceptions About Inclusion

Abstract Due to education policy changes, increasing numbers of young children with disabilities are attending inclusive programs. Professionals in these settings need to have corresponding beliefs and skills so that young children with disabilities can succeed with their peers. This exploratory study examined inclusive beliefs and corresponding practices of Head Start and public pre-kindergarten (Pre-K) professionals. Results indicate that Head Start and Pre-K professionals shared similar and positive beliefs about inclusion. In regard to inclusive practices and general strategies (e.g., arranging the environment, working with families), their responses were also similar. However, they were less certain of specialized strategies, including implementing individualized education plans (IEPs), utilizing alternate forms of communication, and positioning young children with motor impairments. Implications for research, policy, and practice are discussed.

Birth history, physical characteristics, and medical conditions in long-term survivors with full trisomy 13†

The purpose of the study is to provide data about long‐term survivors with full trisomy 13 (t13). Mothers of 30 long‐term survivors with full t13 completed an online survey. Survey data were downloaded into an SPSS database. Descriptive statistics were used to analyze survey data. Tracking Rare Incidence Syndrome (TRIS) Survey data on survival, birth information including maternal and paternal age at conception, physical characteristics, and medical conditions were compared. Data indicate longer mean survival rates (48.4 months for those living at the time of data collection, 40.8 months for those who died prior) than described in the literature. Means for gestations age, birth weight, and length are 38.11 weeks, 2,789.34 g and 48.45 cm, respectively. Long‐term survivors presented with syndrome‐related physical characteristics (e.g., low‐set ears, cleft lip and palate) and medical conditions (e.g., ventricular septal defect (VSD), feeding difficulties). We conclude that data indicate longer survival and a range in birth information (gestational age, birth weight, and length) along with presence of common presenting physical characteristics and medical conditions of long‐term survivors with full t13.

An Evaluation of Family-centered Care in a Level III NICU

Family-centered care is critical to successful experiences for infants and their families in the neonatal intensive care unit (NICU). This article describes a retrospective evaluation survey of family-centered practices in an urban, Level III NICU. Evaluation questions focused on parent satisfaction with unit practices in 4 areas: (a) NICU environment, (b) caregiving practices, (c) communication opportunities, and (d) relationships with nursing staff. Quantitative and qualitative data indicated overall parent satisfaction along with suggestions for improvement of unit practices. Specifically, the need for redesign of the NICU environment (eg, increased space at infants bedside), caregiving practices (eg, increased hands-on practice), communication opportunities (eg, convenient times for care conferences), and relationships with nursing staff (eg, development of parent-professional relationships) are highlighted as avenues for improving NICU practices. Recommendations for family-centered practices are provided.

Promoting Mother-child Relationships for Incarcerated Women and Their Children

According to recent data, approximately 70% of incarcerated women have at least one child younger than 18. In addition, nearly one quarter to one third of incarcerated mothers have children younger than 5. While in prison, female offenders desire to bond and sustain a relationship with their children. They also hope to resume their maternal responsibilities after release. Parenting education and opportunities for extended visits offer a means to this end. This literature review examines programs focusing on improved mother-child relationships through these means. Descriptive and empirical data are included. General findings and common themes are offered across studies. In addition, implications for practice, research, and policy are provided with an emphasis on their relevance to early intervention professionals, programs, and agencies.

Presenting physical characteristics, medical conditions, and developmental status of long‐term survivors with trisomy 9 mosaicism

Much of the available literature on individuals with trisomy 9 mosaicism focuses on reports concerning results of prenatal testing or fetal autopsy with limited reports of long‐term survivors. Data from the Tracking Rare Incidence Syndromes (TRIS) project offer the largest series to date examining the presenting physical characteristics and medical conditions at birth for 14 individuals. Results indicated the presence of low set ears and microcephaly for some children in the sample. Cardiac anomalies were reported along with feeding and respiratory difficulties in the immediate postnatal period. In addition, developmental status data indicated a wide range in functioning level with examples of demonstrated skills provided. Implications for professionals caring for patients with trisomy 9 mosaicism are offered.

Pregnancy and birth history of newborns with trisomy 18 or 13: a pilot study.

To the Editor:The prognosis for infant survival in newbornsdiagnosed with the trisomy conditions Edwardsyndrome(trisomy18)andPatausyndrome(trisomy13) is poor [Goldstein and Nielsen, 1988; Root andCarey, 1994; Brewer et al., 2002]. Major contributingfactors to early mortality include gestational age ofless than 32 weeks, limited use of life supportmeasures, apnea and other respiratory difficultiesand presence of cardiac anomalies [Root and Carey,1994; Rasmussen et al., 2003]. Other authors have[Van Dyke and Allen, 1989; Baty et al., 1994;Rasmussen et al., 2003; Carey, 2005] discussed themedical management and overall health needs ofsurvivors.Newborns,survivingpast2monthsofage,typically present ongoing medical needs in additionto day-to-day newborn caregiving requirements[Baty et al., 1994; Niedrist et al., 2006; Pont et al.,2006].Studies published in the 1980s and early 1990soffer an examination of the strengths and needsof newborns with these trisomy syndromes [e.g.,Goldstein and Nielsen, 1988; Van Dyke and Allen,1989; Boss and Broers, 1992; Root and Carey, 1994;Nembhardetal.,2001].Somerecentresearchershavereviewed birth registers from the 1980s to the mid1990s and have found improved outcomes com-paredtotheothers[Canfieldetal.,2001;Parkeretal.,2003]. Further, cardiac surgery has assisted inextending the life expectancy for some infants withrare trisomy conditions [Graham et al., 2004]. Lessinvasive procedures and interventions are alsoproviding avenues for improved daily managementandlongtermcare[Koshoetal.,2006;Linetal.,2006;Niedrist et al., 2006].It is imperative to examine the varied courses andoutcomes for newborns with these conditions inmore detail. Newborns with trisomy 18 (t18) or 13face an uncertain course in the NICU and afterdischarge[Batyetal.,1994;Walters,1998;Rasmussenet al., 2003; McIntosh et al., 2004; Tripp andMcGregor, 2006].In recent years, European investigators havecollaborated with clinicians and cytogeneticiststhroughouttheworldinthedevelopmentofinterna-tionalregistriesofindividualswithrarechromosomesyndrome [http://decipher.sanger.ac.uk/; www.e-caruca.net]. Additional collaborative endeavors areneeded and could include parents and caregivers.The Tracking Rare Incidence Syndromes (TRIS)project can contribute to such efforts through colle-ction of phenotypic data [Bruns, 2006].Thepreviouslydescribedissueshighlighttheneedto investigate maternal pregnancy experiences,childbirth history and presenting needs. This infor-mation can also provide useful, parent-completeddata for registries, open new avenues for parent-professional advocacy and collaboration, and dem-onstratetheutilityofsuchdatabases.Thispilotstudysought to examine:

Twenty-two survivors over the age of 1 year with full trisomy 18: presenting and current medical conditions.

The purpose of the study is to provide data about 22 survivors over the age of 1 year with full trisomy 18 (12–59 months). Mothers completed the online, mixed method Tracking Rare Incidence Syndrome (TRIS) Survey provides data on birth information (e.g., gestational age, birth weight) and medical conditions identified at birth and at the time of survey completion. Data indicate similar birth characteristics to other studies and presence of syndrome related medical conditions including cardiac conditions, use of a variety of feeding methods, apnea, respiratory difficulties, and kidney issues. Associated interventions, sometimes considered “aggressive” or “intensive” treatments including cardiac surgeries were noted in the sample. Implications for treatment are provided and the need for additional research with this clinical subgroup is needed.

An analysis of cardiac defects and surgical interventions in 84 cases with full trisomy 18

Trisomy 18 (Edwards syndrome) is the second most common autosomal trisomy after trisomy 21. Medical issues commonly include cardiac defects, such as ventricular septal defect (VSD) and atrial septal defect (ASD). If untreated, these conditions can contribute to the associated infant mortality. The objective of the study was review parent‐reported information on 84 cases with full trisomy 18 focusing on prenatal and postnatal assessment and confirmation of cardiac defects and on subsequent treatment with cardiac surgery and post‐surgery outcomes. At birth, 65 parent responses indicated the presence of VSD (77.4%), 38 ASD (45.2%), and 50 patent ductus arteriosus (PDA) (59.5%). The presence of multiple cardiac defects was also analyzed including 25 cases with VSD, ASD, and PDA at birth. The total reduced to 18 at survey completion. Twenty‐four cases had one or more cardiac defects repaired for a total of 34 corrective surgeries. Age at surgery varied from 2 weeks to 41 months of age with most performed under 1 year of age. Twenty‐one cases were still living at the time of survey completion (87.5%). From these date we provide recommendations and implications.

Developmental status of 22 children with trisomy 18 and eight children with trisomy 13: Implications and recommendations

Trisomy 18 and trisomy 13 are conditions often referred to as “incompatible with life” or “lethal anomalies.” If there is long‐term survival, the outlook is considered “grim.” Developmental status is presumed to be minimal. Yet, Baty et al. [1994; 49:189–194] described a variety of developmental skills in their sample. An additional 22 children with trisomy 18 and eight with trisomy 13 are described here. A range of developmental skills is noted with strengths in the language and communication, gross and fine motor and social‐emotional domains including indicating preferences, exploration of objects and a range of voluntary mobility. These results serve to expand the knowledge base on developmental status for these groups and advance the need to further explore developmental abilities rather than focus on deficits. Avenues for future research, implications, and recommendations are provided.

Erring on the side of life: Children with rare trisomy conditions, medical interventions and quality of life

Erring on the Side of Life: Children with Rare Trisomy Conditions, Medical Interventions and Quality of Life The prevailing viewpoint on children with rare trisomy conditions such as trisomy 18 (t18) and trisomy 13 (t13) is almost uniformly negative. Yet, case studies offer information about long-term survivors. What is missing in the discussion is an unbiased examination of surviving children within the context of necessary, rather than “aggressive”, medical interventions and overall quality of life. A move beyond palliative or comfort care must be an option for this population.